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Thread: Sick & Tired

  1. #81
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    I wish I could heal you Alysia.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  2. #82
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    I am feeling much better. Thanks be to God.

    I have found a new decent gastro dr. who put me on Budezon (like pred but specific to the colon) which is a good med. Almost no diarrhea. I still can't eat veggies and fruits and if I try I get stomach pains all night long. (I try some, then regret; never peaches again. Never.) But I can now take multi vitamin. So it's ok.

    My joints are calmer. A bit aching still but not as before. The coughing is much less. The bleedings under the nails stopped.

    My Q Fever labs came back the same again. On the border. Not sure what to do with it.... I really don't want to take nasty antibiotics like my wg dr. told me to take. It will kill my poor colon. blood cultures came back negative so that's good.

    I saw my lungs dr. yesterday. I told him about the disagreement between my wg dr, who thinks that it was not a wg flare but Q Fever infection, and the Infectious Disease dr. who said that it is not Q Fever.
    The lungs dr. also thinks, like me, that it was wg flare. We compared the labs after a month of more pred and month and half after rtx, and things got better.

    I can say that the following labs were abnormal because of wg flare:

    paletlets were greatly higher. Now in the norm.
    hemoglobin was lower then the norm. Was down to 9.7 and now it's up to 10.2. Without taking iron pills. Still low but better.
    ALT was higher then the norm. Now it's ok.
    Fe iron was much higher then the norm. It is higher in case of inflamation. Now it's back to be under the norm (because I am anemic).
    Pr3 was higher then the norm. Now it is not.

    So my lungs dr. was happy about it. And also happy that according to the heart echo I don't have endocarditis (infection in the heart valve) which is why he wanted me to go to the ER.

    But,

    The heart echo shows pulmonary hypertension. So he sends me to check nocturnal hypoxemia in a sleeping lab (to check if I get enough oxygen when I sleep).
    Does anyone checked it and knows how it goes ? I hope I will not need to sleep there...

    and -

    Something in the Spirometry test that his nurse did to me, was not ok. PEF 59%. Anyone knows anything about it ? The lungs dr. said that it might mean that there is an obstruction in the bronchi and or trachea because of wg. So he sends me also to high resolution CT. Any info about airways involvement is very welcomed.

    Keeping me busy....

    He asked how do I understand what to look for when talking about wg, so I told him about the forum

    Thank you all for being here. I love you. God bless you all ❤❤❤❤
    Last edited by Alysia; 05-13-2017 at 03:04 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. Likes Debbie C liked this post
  4. #83
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    We are praying for you. Sounds like you're on a positive upswing which is good. May God guide you and the doctors the rest of the way.

    Sent from my SM-G920V using Tapatalk

  5. #84
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    I'm glad to hear the mostly good news.

    Regarding the upcoming trip to the sleeping lab, I'm guessing that you'll have to spend some time sleeping there so they can observe the phenomenon as it occurs. I don't know what apparatus you'll be connected to.

    Are you taking any medication for hypertension? Over the past year, my BP started creeping up. (I had been off all BP meds for five years after my big flare in 2012.) I now take 60 mg/day of niphedipine, and that's keeping my BP solidly in the normal range. When I had my stress echocardiogram a couple of months ago, they indicated pulmonary hypertension in the report, but are not treating it beyond the niphedipine that I was already taking.

    Hope you get the answers you seek. Also hoping for your continued improvement.
    Last edited by Pete; 05-13-2017 at 10:53 AM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  6. #85
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    Thank you for being so caring and thoughful, Pete. I guess I need to start checking my bp.

    Thank you so much for your prayers, Aneinu. Praying for Yosef. May God bless him and heal him.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #86
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    My lungs CT results came back. There is a new tiny nodule. I will see my lungs dr. next month. I think this nodule confirm that what I had was indeed wg flare and not something else, any infection, like my wg dr. thought. So I hope that I dont need to take the 3 antibiotics he wanted me to take. So, good news for me. I never thought I will be happy with a nodule. I knew those antibiotics will kill my stomach.
    I am still on high steroids for my colitis. An amazing med: budezon. It works specifically for the colon. @Rose it is worth checking. It has much less side effects compared to pred.
    I am down at 5mg pred now and feeling extremly tired. I guess it is what it is.
    Thank you all for being here. I love you. God bless you.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. Likes mishb, Pete, me2, Rose, Jaha liked this post
  9. #87
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    I'm glad the budezon is working for you. It must be such a relief to feel a bit better in that area.

    It seems so quick for you to have a flare after your last RTX, that sucks. I wonder what the plan will be now

    Keep taking care, and hopefully, come July, you will have some more answers
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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  11. #88
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    Thanks Michelle. You are so kind and caring and I love you ❤
    The rtx is working like a normal curve - most impact (higher curve) is around 3-4 months after getting it. Less impact is at the "edges" of the curve, after 6 months or right after getting it.
    I got it on March and the flare was between Feb and April, so it makes sense.

    I think that my second disease "confused" the system, making it "thinking" that there is an attack, so it attacked back, that's why I flared.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  12. Likes Pete, mishb, Arleta, Jaha liked this post
  13. #89
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    OOPS!!!!!.....It has been too long since I have been a regular on here, that I have forgotten how to use the system! I see things have progressed somewhat well for you and you are doing better with your colon issue. I Love you Alysia....Always in my prayers. /Hi Dear Friend Alysia, I have just read your post and am so sorry for your issues. We weggies are what my Cardiologist calls "wild cards" because a lot of times, normal tests like blood tests, and some procedures , will not read correctly with us.....for instance, when I was diagnosed with DVT and PE, my dr said that the normal test called a "D-dimer" that tells if you have a blood clot still in your body, would not be accurate.....so he needed to put me on a med that he was sure would keep me clot free. So I guess what I'm saying is, .... When your results come back, I pray you will find answers, but if labs cant find the germ....he may have to treat what he "thinks it may be". If you have all the symptoms of a certain germ, but labs don't show it, you may still have it, but out bodies sometimes work against these tests. I probably confused you, but I hope your Dr. finds out what is going on. I am sure they have checked for Ulcerative Colitis, my niece has that autoimmune dz. and had similar symptoms you describe. And she passed out in the bathroom several times. I am praying for you, You are always here for so many of us. I love you, and pray for drs to find out what is wrong.
    Last edited by Lilly; 06-15-2017 at 01:47 AM.
    Life is a Gift~ Lilly

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  15. #90
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    Dear @Lilly , Thank you so much for your thoughtful comments, caring and kindness. I love you and I keep you in my prayers. God bless you ❤
    I got some answers: I have microscopic colitis, subtype called collagenous colitis. Its also an AI disease and I get Budezon for it (similar to pred). I also had wg flare but I think its over now.
    "Wild cards" is a nice name for us. I like it 😊😊
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  16. Likes Jaha liked this post
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